Plenty of 5-year-old boys get bumps and scrapes, but when Kristy started noticing more bruises than normal on her son Liam, she mentioned it to his doctor. After checking the levels in his blood, Liam’s doctor told Kristy that something was definitely off. Kristy’s heart sank.
Kristy and her husband Stan took Liam to the hospital that day. After more tests, their suspicions were confirmed – Liam had acute lymphoblastic leukemia, or ALL. Kristy and Stan never imagined they’d be hearing this news – the news that their child has cancer. Their prevailing thought: how did this happen?
“We kept thinking, ‘none of this makes any sense,’” Kristy said. “Organic foods, safe ingredient bath products, limited sugar, fragrance-free everything… we did everything we were supposed to do, and this evil disease still found us.”
Liam started chemotherapy just a few days later, which started the process of losing his full head of thick brown hair. He’s had to take oral medications, which look and taste disgusting. One of his medications, a steroid that helps him recover from harsh chemo treatments, makes him feel angry, frustrated or sad much more quickly than normal. He was on this steroid for nearly a month. These “silly meds” as Kristy calls them, posed a particular challenge for Liam.
“His behavior was unpredictable,” Kristy said. “Nothing could have prepared us for watching our sweet 5-year-old have daily tantrums. We make sure to maintain our boundaries and expectations while also talking about how the ‘silly medicine’ is causing him to have really big feelings.”
For Liam, typical milestones are tainted by the difficulties of cancer – he was afraid of being laughed at during his preschool graduation because he had to wear a mask to keep germs away. Going to the zoo is fun, until he’s too exhausted to enjoy it anymore. Luckily, he’s found a few ways to be a kid through it all. Liam is a huge Star Wars fan, and he sometimes brings his lightsaber with him to fight off things like worry before appointments or before taking medicine. He even got a package of Star Wars gear when Lucasfilm heard he was a fan.
Although Liam’s treatment is working, his path to becoming cancer free will likely take around three and a half years. To Liam’s family, that’s three and a half years of worrying, hospital visits and procedures. When Liam’s immune system is weak, there’s a discouragingly long list of things they can’t do.
“When Liam’s counts are down, we cannot go grocery shopping. We cannot go to museums. We cannot go north to the cabin. We cannot go to restaurants. We cannot visit our California family. We cannot use a ‘typical’ babysitter to have date nights. We can’t do our typical holiday celebrations… for three and a half years,” Kristy said.
Through it all, Kristy has made it her mission to be an advocate for childhood cancer research. Liam’s cancer could not have been prevented, but researchers are working, even with limited funding, to find better treatments for him – treatments that don’t include intense physical and emotional side effects.
“One thing we have learned from the doctors is that there isn’t as much funding for pediatric cancers as there is for adult cancers,” Kristy said. “The ‘demand’ isn’t there for medications and treatments because pediatric cancer is so rare. If you are ever looking for a cause to donate to, find an organization that supports children’s cancer research.”
Liam’s road ahead is a long and uncertain one. His diagnosis hit his family hard, and his treatment has been even harder. Liam has had to grow up faster than any 5-year-old should have to in order to fight his cancer – and he’s not done fighting yet.
“We’re living day by day here,” Kristy said. “We’ve got our lightsabers ready for any other disasters that come our way.”